Episode 75: Update on Harvoni Treatment for Hep C

Well, sports fans, it's now been a month and a half since I started Harvoni to treat the Hepatitis C I contracted during a blood transfusion in the 1980s.

So far, side effects have been few, though I did have one mortifying experience with uncontrolled diarrhea in a public place. Nothing is worse than walking through a fast food restaurant trying to get to the bathroom before a major "accident" and not making it in time. But that wasn't the first time that has happened. My theory is the medicine kicked my liver issues into high gear while the virus tried to fight off its attacker, and that was the lovely result.

The diarrhea has calmed down a lot since those first couple of weeks on the stuff, I'm happy to say. I hope that's the LAST time I ever have to deal with that problem in public!

Now I have a new issue--my fingernails have turned brittle and have begun cracking and splitting. Ouch! My fingertips hurt as I type. I'm keeping them cut short, but they still split painfully. Ugh. I also worry that my hair, already thin, is getting thinner. But I suppose far worse things could be going on, and I'll be happy if this virus is killed off.

I've been reading forums online, which is a dangerous thing to do. I learned that long ago when contemplating going on Effexor for my anxiety. If I'd believed everything I read, I never would have gone on a drug that transformed my life from one of debilitating anxiety to relative self-confidence and a clearer perspective. I'm not saying it's a perfect drug, but I'm grateful for it.
And the same will probably be true for Harvoni.

The scariest thing so far about the forums is that a lot of people claim to have side effects long after stopping the drug. Now, supposedly, the Harvoni is out of the system two days after finishing it. So it seems weird that folks would be having side effects when it's no longer in the system. But we do hear about long-term effects of radiation and other treatments that happen long after the treatments have stopped. We see the ads from lawyers about such effects. I really hope nothing like that will pop up for former Harvoni users. I hope I didn't just trade one death sentence for another. On the other hand, we all live under a death sentence. It was worth the risk. I think.

I'll check in again if I notice anything else as I go through treatment. I'm halfway through and keeping my (painful) fingers crossed that I'll be one of the 95-percent-plus patients who are cured of this nasty virus.

Episode 74: Anxiety and Endings

I started this blog some five years ago with an episode on anxiety.

I don't think I come across, necessarily, as an anxious person, and as I explained in that first episode I never considered myself anxious until "later" in life, maybe even in my forties. This wasn't too bright of me, because I'd had nearly crippling anxiety after starting new jobs more than once by then. I'd been a shy, awkward kind of kid, and though I sort of blossomed in high school I've never felt overly comfortable among people I don't know. I still don't, but I've learned to fake it better.

On the other hand, I'm not much of a worrier on a day-to-day basis. I can relax fairly easily if I do not have any uncomfortable tasks hovering in the near future. This situational anxiety, however, has gotten worse and worse over the years and, at this point, I'm pretty sure it has to do with my neurodegenerative condition, many of which affect patients' ability to get motivated and start new tasks. (These tasks need not be uncomfortable, difficult, or negative, in fact. Just switching from one mode to the next becomes incredibly difficult.)

Tonight, however, I'm facing one of my least favorite tasks, and, hence, I'm writing my blog--er, rather, producing another episode of The Mary Dell Show.

Although my various diagnoses and related severe energy/sleep problems forced me to give up full-time work a few years ago, for the past couple of years, I have been teaching one section of English 101 (freshman comp) at the local state university in town.

This is the perfect part-time job for me. All those years of school have not been utterly wasted. I can still impart my wisdom (such as it is) to a fresh new crop of young adults making the transition from home to their first year living with roommates, doing their own laundry, managing their own time, and facing college-level courses. Young people at this age inspire me. The world has not yet beat their ideals out of their systems, as I often fear it has mine.

Before my illness got the better of me, I was a full-time college English professor, a job I'd aspired to when enrolling as a freshman myself at the age of thirty. I had two little boys at home as I pursued my dream. "Why would you become an English major?" I was asked again and again. I was old enough to know, wasn't I, that no one made any money as graduate in English?

Actually, as I've grown older I've become far more interested in the sciences, particularly ethnobotany, but I still do not think I'd trade my English degrees. I was a book nerd long, long, long before that was ever considered cool. I've written stories and poems and journals since I was a child and even wrote three (unpublished) novels in my twenties and thirties.

I love the written word, especially the beautifully written word. Oh, I know all about postmodernism--I was a graduate student at the height of "high theory" in literary and cultural studies during the mid-1990s. I know privileging certain types of literature over others is conservative and old-fashioned. But I love my "Great Books." And I also welcome other types of literature into the canon.

But I digress. The point is, I mostly love my job as a teacher. Mostly. Frustrations exist, as any teacher will tell you. But the worst part of the job, for me, is what is happening tonight: I despise grading. Not just because it is a chore, but it is a chore. Because of my energy issues, I am not on campus more than about four hours a week. I have to bring my students' papers home with me to grade. So here I sit. Computer on lap. TV on for company. BAD study habits, I know. The TV should be off, but the sound of voices on low volume is comforting. Grading is a lonely job.

I finally decided that one reason this final night of the semester is so difficult for me is that it is an ending.

Now, I am not the "mother substitute" type of teacher at all. I maintain a fairly distant demeanor in class. I'm friendly, and I prefer to keep things on a comfortable basis, but I rarely tell stories about my life outside of the classroom unless it is directly relevant to the topic I'm discussing. I used to tell more stories when I was a full-time teacher. I was younger then; perhaps I've grown more serious over the years. I used to like making students laugh. For someone who'd grown up morbidly shy, the power of owning a room is intoxicating.

But all that was before I got so sick, and before my eldest boy got so sick, and before I lost my full-time teaching job because of being so sick, and before I had to give up working full-time as a successful grant writer because of being so sick. I guess I'm more serious these days.

And so I look at this stack of papers and think about the seriousness of my task. Each one of these papers represents a young person who is hoping for an A. Very few of those papers represents an A paper. I have worked with struggling writers for fifteen weeks. What I can say is that those papers are going to be far, far better than the first papers these students turned in back in September. I can say that many aspects of their writing has improved, in some cases dramatically.

What I can't say is that they demonstrate a fluent understanding of punctuation and grammar--though, in nearly all cases, the student's punctuation and grammar has drastically improved over the semester. Are all the papers free of major errors, such as those having to do with correct sentence structure? No. Well, from what I can see, correct punctuation and grammar is mattering less and less these days. I'm horrified by this, of course, but it's a reality. But this still doesn't mean punctuation and grammar don't matter. I'm not ready yet to throw in that towel.

I try to impress upon these kids, for that is what they are--yes, they are adults, but they are young adults, and I'm nearing sixty, so to me they are kids (and quite often act like kids but, at other times, amaze me with their maturity and strength)--that, in fact, grammar and punctuation do matter. And, off the Internet, in the "real world," I do think that is true. Companies value employees who communicate well in person and in writing. And correct grammar and punctuation are vital for producing clear, well-written materials.

Knowing punctuation and grammar is my superpower.

It's not going to save lives. But writing might. Writing has. 

I want my students to have these tools so that they can go forward with powerful personal agency and be advocates for themselves and others.

So tonight is difficult. I want to see these students succeed, but I know I'll face papers that have errors that will take away from strong content. I'll face papers in which students haven't correctly cited a source, one of the key skills they are supposed to learn in my class and one that I've stressed since day one. I hope that, in all cases, those problems will be minimal and will not cause the student to fail this last of four papers. They cannot revise this last one. This is it.

Whatever the reason a student does not learn basic sentence structure--poor teaching/curriculum in schools, lack of interest/motivation/study skills by students, learning disorders, whatever--those problems cannot be entirely "cured" in fifteen weeks. And that is painful for me.

So many of my students this semester worked hard. They revised papers that did not pass the first time, in some cases for each of three previously assigned essays. They care about what they are doing. These are the ones I want to give an A just because of how far they have come. That, alas, is not what my employer expects me to do, and I know that maintaining academic standards is important. It still kills me.

And this is it. Since I only teach this one class, I won't see these students again. I'm a little sad about that. And so I'm anxious. I don't want to judge these kids. I just want to support them. Damn, I hate grading. Better get to it.

Episode 73: The Healing (I Hope) Venture Begins

I just took my first Harvoni pill, the first of some 90 that I will take over the next three months, one each day.

Will I be cured of my Hepatitis C in 90 days? That remains to be seen--but I have a very good chance of that for the first time since I unknowingly acquire it during a blood transfusion in 1980 or so.

I received the packet on Wednesday, and this is Friday morning. I decided to wait until now because Thursdays are my big day--I teach a class at our near-by college for an hour and 45 minutes, then drive about 1.5 hours to the nearest campus with a PhD in English program, then sit in a three-hour class, and then drive home again.

I didn't want to risk having diarrhea or other untoward side effects on that long day. Next week, I'll know better what I'm in for.

The bad news is that I picked up a bad cold, or possibly even the flu, from Honey, who contracted it from his kids. Honey is now a lot better, but he sounded horrible for a few days, and now I'm descending into that miserable sick world. But I didn't want to wait any longer to start the Harvoni.

ATTENTION, INTERNAL HEPATITIS C VIRUS CELLS!

GET READY TO HAVE YOUR ASSES KICKED!

Oh, I do hope that is what happens. I'll check in again as soon as anything comes up vis-a-vis side effects or any other reactions. Wish me luck, sports fans!

Episode 72: Upon Beginning Hepatitis C Treatment, the Bizarre New Experience of Hope

"Hope is the thing with feathers."

Yes, I know this quotation is practically a cliche now, but as someone who is about to finish her PhD in English somewhere around the ripe old age of sixty, I could not forego the opportunity to quote a little Emily Dickinson who, if I were concentrating in American Literature, would be my gal. As it is, I'm in British Lit, and I still haven't figured out who to choose for my focus--I have at least five favorites.

As usual, focus eludes me.

So, let me NOW get to the topic of the day: Tomorrow I start an eight-week course of treatment for Hepatitis C, Genotype 1a, on Harvoni. Perhaps, just perhaps, when I finish I will be blessed with the talent of focus, which has never been one of my greatest attributes, but which has now pretty much completely flown the coop of my brain.

"What?' you ask. "Didn't you, Mary Dell, just air an episode bewailing your inability to afford treatment?"

Yes, in fact, I did, and that is what I believed. However, the stars aligned, and tomorrow I will receive, at no cost to me, my first shipment of a month's supply of Harvoni. I received a grant for the copay of nearly $4,000 of the $50,000-ish cost of the treatment, and before anyone yells that it is the people who aren't working who don't have to pay, which isn't right, the fact is that I have worked my whole life and only stopped when I got too sick to do so full-time.

Before you judge, walk a mile in my shoes. If you can manage to walk a mile; I'm not sure I can anymore. Once I tried to walk from my honey's house to mine, a distance of 1 1/2 miles, and I couldn't even get halfway. A woman pulled over to me, where I sat with my head in my arms on the side of the road, and offered me a ride. I don't know what would've happened if she hadn't.

Besides, maybe I'll be cured, and maybe that cure will have a significant effect on my degenerative brain disease, my sleep disorders, and my worst foe, a weakness and lack of energy that has nearly destroyed my quality of life. And if I'm cured and can do it again, I would love to go back to work and bring in some cash.

This being on disability is no joy, let me tell you. I pull in a fraction of what I made as a college professor for some years and as a grantwriter at a non-profit organization for nearly a decade. My darling cottage is not so darling anymore because it's in desperate need of maintenance, but I can't afford that.

Winter is Coming fills me with dread, because keeping my little poorly insulated 1940s house warm during bitterly cold mountain winters will suck even more out of my budget when I already live on the edge of being turned out of my home. I have no luxuries, although my son and I do go out to restaurants now and then. Hey, I was spoiled by my father, who took the family out to eat every Sunday night. My grocery bill these days is small because, with my conditions, I have little to no appetite, so I see any occasional night out as an opportunity to get some nutrition in me.

I do love to cook, but now we're back to the original problem: my fundamental lack of energy, my general exhaustion.

I do so hope that my energy problems will be cured along with the Hep C! I'll try to regularly check in to let you know how the treatment is going.

Hope about my future is fluttering inside me for the first time in a very long time. It feels weird; I've forgotten, honestly, with this bubbly sensation felt like. It's very much like a thing with feathers beating against my rib cage--a bluebird, perhaps, flitting through the trees as a new dawn breaks.
________________

N.B. For a wonderful photo of a bluebird in flight, see a blog by Bud Titlow in the Tallahassee Democrat serendipitously titled "Eastern Bluebird--Is Happiness on the Way?"

Episode 71: Feeling Faint: On Severe Heat Intolerance

Today was a beautiful day on the mountain--77 degrees. It doesn't get much better than that.

Today was also one of the rare days on which I am awake during daylight hours. I have reversed circadian rhythm and diagnosed idiopathic hypersomnolence--a condition that researchers now attribute to brain dysfunction. Heat intolerance, too, is a symptom of many neurological conditions.

The sun wasn't out, but the air was was soft, with a freshening breeze. With several hours of daylight left, I turned to my favorite hobby--one that is difficult to practice regularly because of the aforesaid reversed sleep pattern. It's difficult to garden in the dark.

So, to the garden I went, a bit distraught that weeds can proliferate so quickly between my visits to its beds. But there's perhaps no better stress reducer for me than getting my hands into the dirt and yanking out weeds. Because we have had a lot of rain this summer, the mugwort, foxtail grass, and sorrel came up easily. I actually like all of those plants--mugwort for its herbal properties, as I'm a wanna-be herbalist, foxtail for its beauty in fresh and dried flower arrangements, and sorrel for its culinary uses.

But this garden runs along the beautiful stone wall in front of my property, and I must have some awareness of curb appeal as it affects my neighbors and their property values. That being said, I've allowed the milkweed to take off after volunteering--but it grows to some six feet high and looks kind of weedy after the flowers have bloomed. I've held it to the back of the border this year and will continue to let it grow here as a monarch butterfly nursery--or hatchery, rather.

Here's the front corner of my wall,
which I love. This everlasting sweet pea
is no longer there, but I do have some farther
down the wall. This corner now
has hostas and ferns. 

But to get off my gardening tangent, the point of all this is that I pulled out the weeds--and, truly, there wasn't such a huge number of them--and before long I was feeling faint and sweat was pouring from my scalp, face, and the rest of my body.  I wasn't able to spend nearly the time I'd hoped to in the front garden; before I could even remove the detritus from the wall, I had to retreat to the front porch where I rather collapsed on the glider. And, I repeat!, today was 77 degrees, with no sun, absolutely perfect gardening weather. I should have been able to spend hours out there. I don't think I reached an hour--more like 45 minutes--before I had to throw in the towel--er, trowel.

After a couple of hours of relaxing on the porch, the yard called out to me again. Well, actually, the porch railing called out to me. I picked up the clippers and began chopping the new growth of wisteria that winds around the porch railing, saving it to twist and bend it into a wreath. In all I might have clipped eight thin tendrils. I then noticed that the space between the porch and the rhododendron had filled in with new growth, too--and the electric meter lies back there--so I need to keep it clear (though I rarely do, to be honest. Just another of those chores I rarely have the energy for; the list is endless.)

The front of the "cottage"--and the ornamental grass I
had to clear away (though just a little of it). The
rhododendron is right behind it.

At that point, I was pushing myself. I used the clippers to cut away some of the ornamental grass--admittedly not the best tool, but I was feeling weak and faint and sweat was pouring from my pores, so I managed with what I had. I pulled up about ten stalks of jewelweed, and no plant pulls out of the earth more easily than that. I clipped about five or six branches of the rhododendron.

And once again, I felt as if I were going to faint. I was soaking wet from head to toe.

Neither of these ventures into the yard should have winded me in the least. They wouldn't have winded anyone I know who is my age or even older. Especially, need I say again, because of the beautiful weather today.

I haven't felt well since, and now it's 1 in the morning and my head is killing me. I've landed exactly where I spend most of my awake time--flat on the couch.

Honestly, it's summer in general. Not just this day, but the cumulative effect of the hot weather on my body, which just can't take it.

So is this because of my as-yet-undiagnosed neurodegenerative disease? Or is it somehow connected to the Hepatitis C? Who the hell knows. My doctors don't care that much about figuring it out. I was released to yearly checkups by my cardiologist; he doesn't think there's much wrong with my heart despite a history of severe-to-malignant, medication-resistant hypertension with hyperaldosteronism and a series of abnormal cardiac tests (AND being told in 2008, upon admittance to intensive care from the emergency department and being told by the staff cardiologist that I'd probably had one or two heart attacks and was in heart failure--but that's a long story for another day).

I realize this episode is totally self-centered. I haven't reached out to my viewers (all one of you, ha) at all--very bad form. But I'm chronicling my health here because I'd rather bitch and complain to a computer than to my friends and family. They know when I'm not feeling well, but I don't want to bore them with every detail. So you, dear computer, are my confidant, and I thank you.

That being said, here are other resources on heat intolerance for viewers who would like to read further on this condition:

• Heat Sensitivity and Hot Temperatures. Brain & Spine Foundation. http://www.brainandspine.org.uk/heat-sensitivity-and-hot-temperatures

• "Sucking the Fun Out of Summer." The author has heat intolerance due to Chiari Malformation and POTS (I believe I have the latter, which is associated with autonomic dysfunction):  http://www.brainandspine.org.uk/sucking-the-fun-out-summer-my-experience-with-heat-intolerance

Episode 70: On Remaining Engaged and Focused, Or The Lament of Living with Severe Chronic Disease

Robert Pinsky, writing about Stevie Smith's poem "Thoughts on the Person from Porlock": But maybe we are also ridiculous for smiling at Smith's expressed longing for a Person from Porlock, while we fail to appreciate her genuine, heartfelt misery: misery of feeling the immense human desire for accomplishment, engulfed by our limitations. Under its charm, her poem grieves for the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself. 

Since giving up my job due to my smorgasbord of chronic illnesses--and receiving Social Security Disability Insurance benefits to keep me going, thank goodness--I have confronted the usual suspects that anyone who is forced to walk this road has or will encounter:  lack of sex drive (discussed in earlier episodes) is a major one, of course, but even more worrisome to me (if not to my Honey) is a greater lack of drive, period.

Until I saw a Linda Rondstadt interview in which she discusses the complete lack of motivation brought on by her Parkinson's Disease--she says she doesn't do much of anything anymore other than lie around and read books--I didn't realize this ponderous lack of motivation for just about everything was due to my neurodegenerative illness. I figured it had to do with fighting against depression--but until very recently I haven't felt at all depressed. The desire to do things, to make things, to make things happen, was still very much alive, but a correlating motivation was simply missing.

I actually saw this medically described in an article about being unable to get up from sleep in order to go to work or do anything else, which I suffered from in the last five years or so of my working life. I'll try to find that article again, but the essence was that it takes three components to motivate a person to get up from bed, or, I'll extrapolate, to move from one activity to another, which I also have terrible problems accomplishing.

The three components are desire, motivation, and (if I remember correctly) ability. All those days I lay in bed, sleeping through alarms and even prescribed stimulants, I had immense desire to go to work. I loved my work. I loved my coworkers. I loved my job. Oh, it had its stresses and its aggravations, as any job has, but the rewards of doing good work for a good organization with a good mission, and seeing results, and all those other wonderful aspects of having a good job meant the world to me. The last thing I wanted to do was show up late again--it was downright embarrassing. I wanted to get up and go to work, dammit!

So, desire was not the problem. I had plenty of desire. Ostensibly, I also had the ability. I could freely move my body (or so I thought). However, studies show that the degenerating brain may not work properly to make these things happen, so I would have to say my ability was impaired. That, I suppose, is what all those doctors' reports and my own statement showed the feds when they reviewed my application for benefits--but for a person who was always a "self-starter" and somewhat of an over-achiever, this is a bitter pill to swallow. That ability malfunction also, of course, affected the motivation function, the actual spirit that animates the body when it decides to move its legs from the mattress to the floor and stand up.

So weird. The whole thing is so weird. As an over-achiever, I never dreamed I'd come to a place in which I'd be unable to do whatever I set my mind to doing. But here I am. It's as if I've literally burned myself out, though it's my brain that's burning out, filling itself with little white matter lesions that are playing havoc with my life. And it's a real despair to realize that, even for those things I'm most passionate about, I may no longer have the capacity to carry out what needs to be done.

The latest "big" thing I want to do is to preserve a swath of woods in my town in which a colony of pink lady's slippers--North American native orchids--as well as many other native woodland wonders grow. I've already received the verbal support of the director of our local university's ethnobotany program, and I just got a letter from the small city where I live offering its support, along with its concerns. Those concerns were ones I had already assumed--I would need to get a group of citizens together who care about preserving our natural flora in order to raise money that we might need as a match for any grants we might get.

Pink lady's slipper (Cipripedium acuale)
Photo from UW-Madison, Department of Botany

As a successful grant writer, I know I can write the grant proposal. Or at least, I used to be able to write the grant proposal. And I spent years doing coalition-building and bringing projects to fruition in my job, so that part should be cake as well.

But I'm afraid. I'm afraid that all this desire will go nowhere. Somewhere along the line I'll let the ball go. I'll get started and then I'll disappoint people. I won't follow through.

In short, I've become a flake.

I can't commit to anything.

If I say I'm joining friends later, nine times out of ten I don't make it--I'll be asleep, or I'll be unable to motivate myself off the couch.

If I can't be counted on to carry through on that--the most pleasurable thing I know of other than spending time with my Honey and/or my kids--how can I be counted on to carry out anything else?

And so, I have to say, reading the lines by Robert Pinsky in the epigraph did make me feel better. This is a human flaw, not just a flaw of those of us with chronic disease. However, the flaw truly does become pathological, nearly insurmountable, with this brain I have. I fight it--I do. I start things with full intentions. But I disappoint myself again and again and again. It's kind of horrible.

I know I have to bull through this somehow, but I also have to be realistic. Perhaps I could find a champion for my lady's slipper cause who has the energy and ability to see the project successfully through, even if it is "my" baby.

But I do know that only I can muster the desire, motivation, and ability to write my books--my fairy book for young girls, my memoir, poems, fiction--and that's the greatest fear of all: that I will leave this world without having put those memories, those ideas, those dreams onto paper and maybe, just perhaps, being remembered for that.

And it's hard not to get depressed in the face of this fear, and this reality, which is the struggle I'm now going through. It helps to write about it, I guess. I found the Pinsky quotation quite by accident--by watching an old episode of Inspector Morse, in fact, in which he calls his sergeant "The person from Porlock." That led to an Internet search, and my reacquaintance with Coleridge's "Kubla Khan," and with Robert Pinsky's thoughts on the Smith poem.

Those are the happy episodes that keep me going. Like maybe there is a purpose to my life after all. And, no, I don't want to read A Purposeful Life or any of that. My metaphysical beliefs have atrophied along with my brain, I guess. I just want to be able to do, and to make, and to make things that matter. That's all.

Indeed, I lament "the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself."

For now, I have the rest of an Inspector Morse episode to watch--and this one, "Twilight of the Gods," has John Guilgud in it! There still are pleasures left in life!

Episode 69: Can't Afford Life-Changing Hepatitis C Treatment

Every day on TV, ads for Hepatitis C treatments promise me a new life.

I contracted Hepatitis C in 1980 when given a transfusion during a D and C--a procedure to scrape out my uterus. I'd been bleeding heavily since giving birth to my first son, and when Dr. Townsend saw me in the recovery room after the D and C he said there'd been placental material inside, most likely from Jason's birth but also possibly from a miscarriage. In any event, I bled a lot and was given two pints of blood from the Red Cross blood bank in Washington, DC. In those days, blood wasn't tested for AIDS or Hepatitis C because neither disease had been identified or named until AIDS in 1983 and Hep C in 1989.

Luck of the draw, I guess.

I need to get this publication!
https://www.opensocietyfoundations.org/publications/hepatitis-c-treatment-price-profits-and-barriers-access

Recent studies have found that most Hep C transmission is due to medical procedures, not risky behaviors. For more information on this, see this article in Internal Medicine News.

Throughout the years I've had this blog I've been searching for answers to the weird symptoms I've had, many of them neurological. Only recently have doctors found HCV, the Hepatitis C virus, replicating in the brain. That probably means my white matter/demyelinating disease, and probably my diagnosed hypersomnia--which though called idiopathic is now known to originate in the brain--are due to the decades large quantities of HCV that have been circulating in my blood. Despite this, I have never been treated.

I have HCV genotype 1a, the most difficult to eradicate. In the past, the only treatment was some 49 weeks on Interferon and Ribavirin, and the treatment frequently led to flu-like symptoms, depression, and a bunch of other problems I didn't want to invite into my life. While I was working full-time, I couldn't even think about doing that. I was already so run down with my hypersomnolence, lack of energy, and host of other diagnoses that I was pretty sure the treatment would kill me, and I was still alive (barely) without it, and being alive is better than being dead. I think. Even after going through that treatment, the odds of clearing the virus were only 50 percent.

Now, of course, brand-new treatments are available, and one is highly effective against genotype 1a and is administered over only a couple of months rather than nearly a full year. And I'm on disability now, so even if it does knock me on my ass I can absorb that for a brief period of time. I went to my gastroenterologist, though, and he informed me of the following:

• Insurance companies will not approve treatment unless I have evidence of liver disease. My liver has held up pretty well through all of this, though I'm going for a biopsy in the morning. It has been something like 10 years since my last biopsy.
• Treatment for Genotype 1a costs $45,000.
• If I am liable for 20 percent, that means I'll owe close to $10,000.
• I am on Disability and have a three-hour-a-week part-time job, so my income is just barely over the poverty line--but is OVER, so I am not eligible for any state or federal assistance with the cost of drugs that are making some CEOs out there very, very, very rich.

Let me be straight: I don't begrudge the poor people their subsidies. I am damned close to poor, and it is damned hard. I know what it's like to be comfortable; I grew up in a middle-class home; my father was an electronic engineer and my mother a homemaker. I know the difference. 

Blaming the poor and begrudging them the help they get from the rest of us just distracts us from the main problem: the fact that the wealthy do not pay their fair share of taxes (thanks to Reaganomics) and the other fact that far more of our tax money goes to the war machine and sketchy crony contracts than to help the poor, old, and sick among us.

Meanwhile, if I lived in Australia, the treatment would be paid for by my government, no matter how I contracted the disease.

So here's my dilemma now. 

I really do want to have this disease treated. I really do want to feel better. I would love to be able to go back to work full-time and make some decent money so I could fix up my rapidly crumbling home and pay off my current bills and be able to enjoy my last days without constant financial worry on my mind. 

But $10,000?  How the hell am I going to do that? I don't even have good credit, thanks to my then-employer's terminating me when I became too sick to teach full-time anymore. I had to declare bankruptcy and am slowly working my way back to half-decent credit--but who the heck is going to give me a loan?

This is why universal health care needs so badly to be instituted in this country. There is no reason for drugs to cost that much when pharmaceutical CEOs are bringing home gazillions of dollars every year in salaries and bonuses. There is no reason for insurance companies to limit their coverage when insurance CEOs are bringing home gazillions of dollars every year in salaries and bonuses. 

We are a stupid people, we Americans, to let this go on. We keep electing puppets into Congress who don't have our interests at heart--not the tiniest bit. And we are paying for our stupidity with our very lives. When are we going to wake up? I did my part--I voted for Bernie. I just hope he is the beginning of a wave of awareness in this nation. We the People need to take back health care from the vampires sucking our blood--even mine, chock full as it is of a deadly virus.

Episode 68: Hepatitis C and Parkinson's Disease Linked--Could This Be the Answer?

I hate writing about my health all the time, but I guess I want a record of what I've gone through in case it helps anyone else. Maybe it will help my kids someday to understand why I have had so little energy and have fallen so far in my life, from a promising career as a college English professor some seven years ago to my current status as poverty-stricken, disabled fifty-something slug.

I've tended to downplay my hepatitis C since being diagnosed early in the 2000s after giving blood for the very first time. I don't like needles, so I'd avoided giving blood my whole life, but while teaching college-level classes in the local high school I was talked into donating by my over-achieving kids. I wanted to help them reach their goals as Red Cross volunteers. And I subsequently received a letter from the Red Cross telling me my blood had been tested two or three times, and it was positive for Hepatitis C.

Sometime between 1979 and 1983, the years my boys were born, I was given two D and Cs (procedures to scrape out the uterus) at Columbia Hospital for Women in Washington, DC. I kept bleeding heavily after the birth of my first baby, so my OB/GYN suggested the procedure. The first one didn't work, so they did it again. I was given two pints of blood in a transfusion during one of the procedures. This was the pre-AIDS era, and Hep C didn't even have a name yet (and wouldn't until 1989). Blood was not screened then, and IV drug users were the most common blood donors since they could do it for money.

I had no clue that I had this disease until some two and a half decades later. And now, it has been--yikes!--close to forty years since the virus began circulating in my veins. Thus far, my liver has proven strong. My last liver biopsy--admittedly some six or seven years ago--showed no fibrosis, the first step toward cirrhosis and potentially liver cancer that can happen due to infection with Hep C, or, rather, HCV, as the virus is known.

My genotype (1A) is the most difficult to cure. In the past, treatment required 49 or so weeks (nearly a year) of interferon injections as well as daily oral doses of ribaviron. Interferon has nasty, sometimes debilitating side effects. Not only that--the grueling treatment is only effective in about 50 percent of those with my genotype. Pretty lousy odds when having to potentially give up a year of one's life. As I have been my sole means of support since my husband and I split in 1985, I never felt I could afford the time off to be treated.

I also hoped that treatments would improve and, lucky me, that has happened. There are now several options to treat my genotype with oral medications over six to eight weeks, and the cure rate is 98-99 percent.

Just in time. And, truly, I am lucky. I now have a chance to feel better. I realize my trying to find the cause of my problems may all have been simplified if I'd just attributed them to hepatitis C. The thing is, the HCV virus's neurotoxicity has only recently been recognized.

The eminent Dr. A., my local neurologist, told me c. 2013 that I have some sort of neurodegenerative disease, but he couldn't say for sure which one it might be. "If you had white matter disease in your cervical spine," he told me, "I would say you have MS." I don't, though. I just have white matter lesions all through my brain. What are they? Could they be the Lewy bodies of Parkinson's?

Not too long ago, I wrote about the possibility that my problems could be due to Parkinson's Disease. What had struck me most about an interview with Linda Ronstadt, the songbird of my youth, was her saying that she totally lacked motivation to do much of anything other than chill out and read books. Those weren't her exact words, but the symptom struck me as so very similar to the ones I've endured for the past five years or so. (See Episode 64.)

It's as if a switch just won't turn on when I need to shift gears (sorry if that's a mixed metaphor, though they are both mechanical :) ). I get stuck on one mode, whether that be lying on the couch watching TV when I need to sleep, or sleeping itself. Although I dearly love my friends and the times I've spent out on the town with them, I rarely feel motivated to go out with them these days. Even when I plan an evening out, I have a hard time actually leaving the house.

It just seems monumentally difficult to get up, take a shower, get dressed, and go out. I can't tell you how many times during the holidays I let my friends down when I couldn't get together or go to a party with them. And these are the best friends on the planet. I have to be sick if I can't muster up the energy to hang out with them.

I rarely shower or even change clothes nowadays. I know this sounds disgusting. And, no, I'm not depressed. It's just so damned exhausting. And I'm lucky; I don't get "BO." I've confirmed this with Honey. And so the idea of washing my hair, holding my arms up long enough to do that, just wears me out. I've come out of the shower faint and out of breath, with barely the strength to dry off with a towel. The idea of having to do all that gets harder and harder as time goes by, so most of the time I just don't bother.

Rapid Eye Movement (REM) Sleep Disorder is another early Parkinson's symptom that I've experienced over the past year. I recounted those experiences in my previous PD post. Fortunately, the episodes stopped happening after that until one very recently when I actually awoke punching myself in the face! The dream made sense at the time, but I can't remember now what it was.

A few other problems I have that could be attributed to early Parkinson's: increasing episodes of anomic aphasia and paraphasia, difficulty hand writing anything, stiffness and slow movements, frequently feeling faint upon standing, a fall and concussion two years ago while walking and talking at the same time--strangely enough, this is a complicated task for the human body, and doing so with Parkinson's or other brain disorders may lead one to fall, as I did (see "Talking While Walking: Cognitive Loading and Injurious Falls in Parkinson's Disease," among others). A few of my other symptoms include heat intolerance, increasingly stooped posture (so unattractive!), recent onset of chronic constipation, urinary urgency and incontinence, and more.

Every one of these cognitive changes listed on the Northwest Parkinson's Association site applies to me BIGTIME:

• Slowed thinking speed;
• Word finding difficulty;
• Trouble with multitasking;
• Difficulty organizing complex tasks, steps, or instructions;
• Memory problems.

Added to that list is frequent errors in writing that I frequently do not catch--this is a big change for me, an uber-accurate typist and compulsive proofreader in my former life ... though I hope I'm still the "word sorceress" Honey called me recently (I love it!).

More often than not these days, I'll begin talking and my words will jumble up--as if my mouth has not yet caught up to my brain, or vice versa. A previous episode of The Mary Dell is devoted to the frequently humorous and always fascinating word scrambles I've come out with lately.

All of these signs and symptoms point to a degenerating brain--quite the scary thing for a gal always rather smug about the quality of hers.

On the other hand, the diagnostic criteria for Parkinson's includes four cardinal signs, and I can't say that these clearly apply to my muscle and balance symptoms, so perhaps this STILL doesn't explain my neurodegeneration--and none of the possibilities are exactly keen.

Last month, I finally met with my gastroenterologist, who will look into treating my Hep C after he does a few other tests relating to my digestive problems--specifically, a colonoscopy in early February. He informs me, however, that insurance companies will not pay for treatment unless one is showing signs of liver degeneration.

In fact, I've been having some of those signs recently. My liver enzymes were elevated for the first time recently. My digestive problems have increased. And bile was found in my urine when it was tested recently for a urinary tract infection--and that's a sign of liver problems.

Now also, lucky me, I say ironically, because it really is true--I can show even more potential deterioration from the HCV virus, thanks to Medicine's recently linking Hep C to Parkinson's. Yes. Lucky, lucky me. And I will feel lucky indeed if, in fact, the treatment turns my life around again, at least enough that I can enjoy some reasonably healthy years left with my Honey and my kids, not to mention the chance to reach my hopes and dreams. I've thought for some time I've got something degenerative that will take me away sooner than should be--but maybe, just maybe, treatment will stop that process in its tracks and give me some good years left on this planet.

Here are two separate studies that show "significant" evidence linking Hep C and Parkinson's:

Hepatitis C Virus: A Risk Factor for Parkinson's. "In conclusion, our study demonstrated a significantly positive epidemiological association between HCV infection and PD and corroborated the dopaminergic toxicity of HCV similar to that of MPP(+)."

Hepatitis C Virus as a Risk Factor for Parkinson Disease: A Nationwide Cohort Study. "We conducted a large nationwide population-based study and found that patients with HCV exhibit a significantly increased risk of developing PD."

Will curing the hepatitis C arrest the Parkinson's Disease? Whether or not I end up having PD, I guess only time will tell for those who do--I see that a clinical trial on this very question is being conducted. No matter what, getting rid of a damaging virus circulating in the blood has to be a good thing.

___________

N.B.  It is now 2021, and I've been cured of Hep C for some five years.  I can say that most of the symptoms of Parkinson's that I list here have cleared up. I don't think Parkinson's goes away once it starts, so clearly I didn't and don't have it, thank goodness.  Just goes to show how debilitating Hep C can be.  Nevertheless, the articles listed here do show that this link exists, so maybe this blog entry will help someone.